Hi, you have been through a lot, hoping you can find the answers you need. The Dr my husband sees is Dr Singla in Sacramento, CA.
Has your Dr done the 24 hour urine collection? That’s where the hormone shows up if there is tumor growth. Research on the NET research foundation. Many stories are people don’t ever find the primary source of the cancer. We were lucky that after an incidental hernia repair the PS was found, then they can look at the spread. My husband had no symptoms except hernia pain which was unrelated. Now after major abdominal surgery he has no symptoms, back to regular lifestyle. The Dr removed 2 ft of sm intestine, 15 lymph nodes, 1/3 of the liver, gallbladder and appendix. He had an epidural in for a week to combat the pain from surgery, was walking 1 day after. It’s been 6 months since his surgery. He has had 2 surveillance CT scans and blood work follow up. There’s a high chance it will return 95% but for now we take it one day at a time.
Hope that helps!